80 per cent curiosity, 20 per cent hope

On the highway, heading into Bega. Royal blue summer sky, black and white cows dotted across unseasonably green hills.

I turn to the Mechanic. ‘I think I might be depressed.’

‘Well, that’s fair enough,’ he says. ‘I’d be depressed if I were you, considering everything. I’m amazed you’re not depressed more often.’

As validating as I find this, it hardly makes me feel better.


I admit that I’ve been finding it hard to get out of bed lately. I mean that literally. I wake up and all feels fine. But as soon as I try to move, my lower body snaps into a painful, shuddering spasm that starts in my feet, twisting them to unnatural angles, and continues up my legs and into my belly. All I can do is keep breathing and try to relax. When the spasm subsides I’m left panting, my muscles scorched and tender.


My physical trainer, Jaimey, rang a few weeks ago to say he was no longer willing to work with me. Something about, ‘Our goals are no longer aligned’. Truth be told, I can’t remember ever discussing goals. If he’d asked me, I would have said, ‘Stay upright, stay strong, stay mobile’.

If my trainer has given up on me, does that mean I can too? I hear about people who die ‘after a long battle with [insert condition here]’. I always think, ‘Well, no wonder they died. It must have been exhausting.’


My friend Surya’s in town and we’re having a coffee in Bermagui. He says, ‘How’s the MS?’


‘How bad?’

‘OK, this is how bad. My friend Sharon is a Christian. She’s been praying for me and she wants me to have a ‘healing’ with the local Anglican minister. And I’m considering it.’

‘Yep, that’s bad,’ says Surya. ‘You think it might help?’

‘Well, what’s to lose? I’m imagining something out of The Exorcist. I’d put my motivation at 80 per cent curiosity, 20 per cent hope.’

He nods gravely.


Above, I referred to Jaimey as my physical trainer. But it makes it sound like I was working up to the 200 metre hurdles. Hardly. But whatever we’ve been doing on Tuesday mornings for the last eleven years, I believe it’s the reason I’m still on my feet.


My Christian friend Sharon rings again. She tells me that she’s now fasting for me too, ‘but only every second day.’ (I guess the alternative would be called a hunger strike.)

But, fasting? She’s serious. ‘OK, OK, I’ll do it.’


I wake up at 3 am wondering what Jaimey’s goals were.


One Wednesday afternoon just before Christmas I drive out to Sharon’s property in Wandella and sit at the dining table with her and the Reverend Mandy, a pretty, kindly woman in spectacles, black trousers, shirt and cardigan and a dog collar glowing faintly at her throat.

We speak briefly about my condition, and about God, whom Mandy refers to as ‘he or she’. She opens a small, hinged wooden box and takes out two tea-light candles, a box of matches and a small bottle of oil. She lights the candles and daubs a cross on my forehead with the oil. It’s scented faintly with cloves.

I’m not sure if I can believe in an omnipotent God, when I look around me. But I hold with the Mystery, and I lay myself open to any assistance available.

Mandy and Sharon stand behind me with their hands on my shoulders, and pray. I think I weep a little, just quietly. Two good-hearted women, murmuring suggestions to their God, should he, or she, be so inclined.

4 thoughts on “80 per cent curiosity, 20 per cent hope”

  1. Very powerful Jen. Still resounding in my head is your writing about accepting mobility aids and the orange wheel chair with the racing stripe. Not sure how many people l have spoken to about it, but it must be dozens. See you soon.

  2. As ever I am mesmerised by your use of words. I wish I had some useful answers to the questions you raise in my mind.

    I can offer nothing but a hug and my one working ear when we next meet.


    Oh I can always offer honey

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